The National Autistic Society (NAS) has launched a new report which reveals that nearly two thirds (63%) of adults with autism in England do not have enough support to meet their needs. Based on the largest ever UK survey on the experiences of adults with autism and their families, it reveals for the first time the miserable daily reality for many thousands of adults with autism who feel isolated and ignored, are unable to access the required support, and are often completely dependent on their families.
The I Exist report signals a new phase in the think differently about autism campaign. It is the first time a major campaign has focussed on the needs of adults with the disability. The findings of the report reveal a devastating lack of services, as one adult with autism told us: “I only received help when I became suicidal and seriously depressed. At this point the help was too late.”
Key findings from the report are:
- Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.
- 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.
- 61% of adults with autism rely on their family financially and 40% live with their parents.
- 60% of parents believed that a lack of support has led to higher support needs later on.
- At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.
- 67% of local authorities do not keep a record of how many adults with autism there are in their area and 65% do not even know how many adults with autism they actually support.
Amanda Batten, NAS head of policy and campaigns said: “For too long adults with autism have found themselves isolated and ignored; they struggle to access support and are often dependent on their families. It does not have to be like this – ‘I Exist’ is the message from adults with autism who want their needs understood and the barriers to support removed. The right help at the right time can have a profound effect – we are calling on the government to think, act, and transform lives”.
The NAS is calling on the government to fund a prevalence study into the number of adults with autism in the UK. The survey identified a fundamental problem: neither the Government, nor local authorities, nor primary care trusts know how many adults with autism there are in England. This makes it extremely difficult to plan and deliver the services that people with autism need.
The NAS is calling for better understanding of autism – health and social care staff who carry out assessment should be trained in autism. Many professionals fail to understand the complexities of the condition, which can lead to adults with autism receiving inadequate support. The way services are structured also means many fail to qualify for any support at all. This exclusion from support increases isolation and can escalate to mental health problems and other serious difficulties.
The NAS is calling for a range of support services at the right time to meet the needs of all adults with autism. Many feel isolated, having to rely solely on their parents or family. Increased ‘low level’ support, such as social skills training or access to social groups may prevent needs from escalating and helps those with the condition to gain independence and improve the quality of their lives.
The NAS is calling on the Government to lead the way. Current Government policies do not adequately meet the needs of adults with autism. If this is to change, national leadership is required from the Government.
The I Exist report is launched on 5th February 2008 at The House of Commons. The think differently about autism awareness campaign was launched in October 2007. For more information about the campaign and to download copies of the I Exist report, visit think-differently.
The statistics are for England only. Separate reports were produced for Scotland and Wales. In England, 1,412 adults with autism (18 or over) and their families/carers responded to the survey.
- Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.
- Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.
The National Autistic Society is the UK’s leading charity for people with autistic spectrum disorders and their families. Founded in 1962, it continues to spearhead national and international initiatives and provide a strong voice for all people with autism. The NAS provides a wide range of services to help people with autism and Asperger syndrome live their lives with as much independence as possible.
The NAS relies on the support of its members and donors to continue its vital work for people with autism. To become a member, make a donation or to find out more about the work of the NAS, visit the NAS website autism or call the NAS donation line 08702 33 40 40, (national rates apply).
For more information about autism and for help in your area, call the NAS Autism Helpline on: 0845 070 4004 10am-4pm, Monday to Friday, (local rates apply).
The NAS Autism Services Directory is the UK’s most comprehensive directory of services and events for people with autism. Visit autism/autismdirectory to find autism services and support networks in your area.
National Autistic Society